Research Archive

FD/MAS Publications

Association of Hearing Loss and Otologic Outcomes With Fibrous Dysplasia. JAMA Otolaryngol Head Neck Surg. 2018

Comorbidity, Craniofacial care

This study examines FD lesions surrounding the ear and skull base. Though many patients fear the loss of hearing, research suggests watchful waiting rather than aggressive surgery.

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Best practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium. Orphanet Journal of Rare Diseases 2019

General

Treatment guidelines compiled by the International Consortium of FD/MAS researchers. These guidelines include a series of flowcharts that can help patients and caregivers decide on appropriate screening and treatment plans.

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Bone-Grafting in Polyostotic Fibrous Dysplasia. J Bone Joint Surg Am. 2016

Axial and Appendicular Management

Research suggests that bone grafting is not an effective way to remove FD lesions since lesions tend to regrow and take over otherwise healthy bone grafts.

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Research

This library is organized into several sections. Please use the links below to navigate to your section of interest. If you would like to nominate a published scientific work for inclusion, please contact us.

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FD/MAS Beyond 40

A discussion with FD/MAS Alliance Medical Advisor, Dr. Edward Hsiao, UCSF, with FD/MAS advocate Shelley Hebert.

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Surgical Management of FD

A discussion with FD/MAS Medical Advisor, Dr. Jason Malone of Nemours Children’s Hospital of Orlando, and FD/MAS Caregiver, Darci Christner.

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Craniofacial Care

Craniofacial care

A discussion with FD/MAS Alliance Medical Advisor, Dr. Andrea Burke of University of Washington School of Dentistry.

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Bone Pain and FD/MAS

A discussion of FD/MAS and the very common challenge of pain. This session is led by our Medical Advisory Chair, Dr. Alison Boyce, NIH, and hosted by founding board member Wendy Daubel Thompson.

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FD/MAS 101

A crash course in understanding and managing fibrous dysplasia and McCune-Albright syndrome (FD/MAS). This session is led by renowned expert Dr. Michael Collins, NIH, and hosted by FD/MAS caregiver Melissa Pacilio. Find the full recording, including the Q&A section, here. 

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